The Opening of Southampton Paget’s Centre of Excellence
Professor Elaine Dennison and Professor Cyrus Cooper reflect on the opening of the Southampton Centre of Excellence.

On Thursday May 31st the MRC Lifecourse Epidemiology Unit Southampton, hosted an event to celebrate the award of Centre of Excellence status from the Paget’s Association. This was an occasion to reflect back on the research that Southampton has led over the years into the epidemiology of the condition; reminiscences that led our current Dean of Medicine, Professor Iain Cameron, to reflect on his own risk of developing the condition (he was brought up in Preston, where the condition was more prevalent) and Professor Karen Morrison, the Associate Dean for Education, to recall her own medical student days (she met a patient with Paget’s disease in her final exams).

The Metabolic Bone Clinic

Professors Cooper, Dennison and Harvey run the metabolic bone service at the University Hospitals Trust Southampton. The metabolic bone clinic provides services for the diagnosis, investigation and management of conditions including osteoporosis, Paget's disease, hyperparathyroidism, vitamin D related disorders and complex metabolic bone disease, receiving many tertiary referrals for Paget’s disease, with about 60 patients with Paget’s disease under their care. The clinic has access to a full range of support services, including the infusion unit which is located in Victoria House, where intravenous zoledronate is administered. Close working relationships with radiological colleagues ensures access to radiography and isotope bone scanning where appropriate, and bone turnover markers are readily available, in addition to standard pathology testing. The clinic is closely connected with the Osteoporosis Centre and the academic programme led by Professor Cyrus Cooper at the MRC Lifecourse Epidemiology Unit, which has maintained an active research interest in Paget’s disease for many years.

Prevalence of Paget's Disease

In the 1970s Professors David Barker and Martin Gardner, demonstrated regional differences in the prevalence of the condition, postulating that vitamin D deficiency may be a contributing factor. This was followed by a study of the radiological prevalence of the condition across 14 UK towns, highlighting that three Lancashire towns studied (Preston, Bolton, and Blackburn) had higher rates than elsewhere. After demonstrating that the prevalence of Paget’s disease was higher in British migrants to Australia than native Australians, but lower than those who remain in the UK, David Barker reported the prevalence of Paget’s disease was higher in Britain than in any other Western European country. The lowest rates in any country were in Sweden and Norway. In 1999, Cyrus Cooper, together with Elaine Dennison and colleagues, repeated a study of the prevalence of Paget's disease in the 10 towns studied previously in 1994, demonstrating that it was only 40% of that observed during the 1974 study. The decline in prevalence was apparent in all 10 centres, but was most marked in those with high rates in the original study. These declines suggest an environmental contribution to the etiology of this disorder that requires further investigation. A further update on the prevalence of Paget’s disease was published in 2006 when, together with colleagues in Japan and Europe, Professor Cooper highlighted the reducing prevalence of the condition in Europe and its rarity in Japan.

Professor Cooper

A key aim of the occasion was our desire to invite our patients with Paget’s disease to hear more about the condition and we were delighted that so many patients joined us for the occasion. The afternoon began with a welcome by Professor Cyrus Cooper, the Unit’s Director, who rehearsed some of Southampton’s long involvement with Paget’s research. The President of the Paget’s Association, Professor Roger Francis, then presented a plaque. He commended the Southampton application, explaining that it was one of the most impressive applications for Centre of Excellence status the Association had received, detailing the excellent clinical services for patients with Paget’s disease and the breadth and depth of research into the condition. The afternoon continued with a presentation by Professor Elaine Dennison, who discussed the many studies that Southampton had been involved in over the years, which had included the PRISM study, which demonstrated that treatment for Paget’s disease should be guided by a patient’s symptoms rather that the results of blood tests.

Helping Patients

Dr Elizabeth Curtis then presented data from a recent audit of the Southampton service, highlighting areas of good practice – and also identifying ways that we can help our patients, including the development of a patient held health record, aka the patient passport. Mrs Diana Wilkinson introduced the audience to the Paget’s Association, and explained how the Charity works with others, including hospitals, universities and other charities, to advance research and raise awareness of Paget’s disease. Diana concluded with a short video dedicated to the late Ron Taft in which Ron explained how, when he developed Paget’s disease, he gained help from the Paget’s Association and the professionals the Charity works alongside.

The afternoon was very well received by patients. Some brought family members along to hear more about the condition, and many took the opportunity to ask questions pertinent to their own care. Everyone agreed that it had been an immensely helpful and enjoyable afternoon.

Photo from Left to right: Prof Iain Cameron, Prof Diana Eccles, Prof Roger Francis, Prof Cyrus Cooper and Prof Elaine Dennison